Clinical Trials for COPD research

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I've been approached, through my GP's surgery, to take part in research trials. Does anybody have experience of this/these?..Not committed yet but am considering it.

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  • Posted

    Hi Zoony, was approached by Community Matron a couple of months ago it's for my husband. She was going to come out and show me how to use the app on my iPad. Not heard anymore from her about it, have a feeling it's because my husband is very poorly and lots of admissions. Not sure there is a way back for him now, I'm so sad.
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  • Posted

    Hi O'Hara..Nope, not Cambridge..Withington MEU, Manchester.
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  • Posted

    Hi Susan...Hope I don't need apps or pads..not my thing at all. So very sorry your husband is so unwell, such a confusing time in so many ways.
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  • Posted

    The results of any research work may not in the long term directly help you, but it is probably aimed at finding solutions for others in the future who suffer with the same problem.

    On the down side your surgery will be receiving monetary compensation for organising these tests within their patient community, on the other hand, if it is not going to cost you anything and it may help others, then why not volunteer to help?

    If you find that it becomes tiresome or too much of an obligation, then you can pull-out at a later date.

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    • Posted

      Sometimes research does not get started for various reasons,but we should all agree to do the best we can to attend,providing we are able to. After all some of our medicine has been been researched by other sufferers,from previous studies!
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    • Posted

      That was their choice:  I feel i've been experimented on quite enough with statins for supposedly "high" cholesterol.

      I don't agree we should all do anything we don't feel comfortable with, how do we know what the longterm effects can be?

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    • Posted

      Oh how I agree with you ,last year my consultant prescribed MONTELUKAST for me ,,,,but I had terrible side effects,,,,I gave it a good try ( for a couple of months) but finaly told my GP I wasn't going to take it anymore ,,,he said  "  I have no problem with you stopping it " 

      then this year back at consultant he prescribed me SLO-PHYLLIN ,,( I have to say it told him how good I had been feeling the last few months ) so I gave it a try ,,,,again terrible side effects ,,,so I stopped it after 2 weeks ,

      ( I certainly didn't want to go through what I did last year ) ,,,then I had a prebooked appointment with copd asthma nurse for a  routine check up ,I told her I had stopped the pills, but she suggested that the consultant really wanted me to persevere with it ,and suggested one pill a day ,,,,so ok I thought ,,,,,,again the side effects kicked in so after 5 nights of about 2 hours sleep ,and no appetite ,,,,I rang her again and said I had stopped the pills ,,I don't think she was suprised ,and said well ypthere obviously not for you ,

      what I can't understand is ,,,,why change my medication after 20 years and no side effects ,I will be more upfront when I see consultant in august and ask him WHY ,

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    • Posted

      I don't blame you for dropping medication which affected you so badly but in answer to your final question, obviously the lack of side effects isn't the only reason to stay with existing medication if it's thought a new one would have more benefits for you.

      Surely it's a matter of balance with any medication?

       

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    • Posted

      Your so right ,but I did feel sooooo good when I saw the consultant ,,,I thought he would be pleased with my progress after a sh,,year last year ,

      the day before I saw him I did 2&1/2 Klm on treadmill ,,no problems ,

      Everyone here seems to know numbers for this that and the other ,,I'm thinking of asking for a copy of my lung function tests ,

      but yes you are right ,,,,there's always new medication being found ,,,who knows one of them might suit me ,

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    • Posted

      The only number I'm interested in is my percentage of lung function and keeping it steady, which I have done since diagnosis 3 years ago, at 70%.    Considering I'm nearly 69 and was stupid (addicted) enough to smoke for more than 40 years I feel lucky it's not much much lower.

      I don't really care if I'm classified as having low level COPD according to some figures, or moderate according to others, checking the lung function level and continuing what I'm doing to keep it there as long as possible is my priority

       

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    • Posted

      TWINS ,,,,,,I'm 69 ,smoked from age 15 to 46 ,,,with a couple of years knocked off as stopped a few times ,I was diagnosed back in 1992 ,

      one number I know of mine is my lung capacity ,,,,,that's 64%,so considering everything,,,,,,,,, I agree with you ,,,,and thankful that one day we came to our senses and quit the weed for good ,

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  • Posted

    Hi I have never taken part in a clinical trial but I guess if it is to test new medicines it is very worthwhile.

    What puts me off is seeing figures for people who have suffered lifelong damage or even death from taking part in trials,  but I am sure the vast majority of people are ok and might even benefit themselves with new meds.  x

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